About an hour after I take it, I feel like I drank a triple espresso. At night it is causing insomnia. So far this is the only side effect except some nausea after my morning pill.
My lymph nodes have gone down slightly. White count went up 5000 points in the first week, but interesting enough, my HGB is now in normal range
Any idea why it would cause insomnia?
Renee
From memory, I think I did have problems with my sleep when I first started to take Pirto last October but I'm fine now. If it's any help I take it at bedtime.
I take a split dose, 100 at 9 am and 100 at 7:30. I find if I take it later, I have trouble falling askeep even with a sleeping pill. My body teacts so differently to drugs than most folks. Not surprised by this but am hoping it doesn’t continue.
I have been on it since March and sleep like a baby but I only sleep now fo five or six hours a night. I used to sleep seven hours.
Best
Dace
I'm getting a good 8 hours now that I blame it more on anxiety, rather than the ibrutinib. Then on those rare occasions reach for 50mg Traz.
I have not had any issues with insomnia while taking Pirtobrutinib. I usually take it at around noon each day.
My lymphocyte count jumped up by 100k in the first 4 weeks. The next 4 weeks it dropped by 100k. My non-medical thought is that the Pirtobrutinib forced the lymphocytes out of hiding into the bloodstream and during the next 4 weeks, the CLL lymphocytes died off.
I think that’s how it works! Going for blood work tomorrow to check.
How are you doing on pirtobrutinib? I’m supposed to begin soon and of course I’m concerned
Doing ok. On it 5 weeks, wbc and lymphs coming down slowly., Some gastro side effects, bloating and gas and some dizziness with a slight headache, which is new last 2 weeks. My head feels full like I have congestion from a sinus infection, but I have no sinus stmptoms or fever. I can still feel the nodes in my neck and under my chin, though others under my armpit and groin have almost disappeared. I have to do weekly blood work and my first follow up to see my specialist is November 8. Only time will tell if it’s working. I have a hard time achieving and/or sustaining remission, but I am hopeful this drug will work.
Good luck to you and I hope you have a great response and a long lasting remission.
Blessings, Renee
Disease Progression on Pirtobrutinib
starting acalabrutinib while waiting for pirtobrutinib to be FDA approved
Swollen hands since starting Acalabrutinib
